Insomnia

It's 2:24am and I am wide awake. I haven't been able to sleep this entire night.

How can it be possible for a mother of four, including a newborn, to not be sleepy????

Can I really have somehow, in three days of fevers and staying as horizontal as possible, caught up on the lost sleep of the last 2 months?

Or is it that my brain is making up for those lost days with little thought beyond "What time is it?" and "How soon does that mean I can take more Tylenol?"

Whatever it is, I can't stop thinking about stuff. I even got up at midnight and wrote everything down in lists to see if that would calm my brain down enough to sleep. It simply freed my brain up to think about other things.

I now currently have three of four children awake. Elli woke up because her Tylenol wore off (she had surgery last Wednesday and is still sore), Anna woke up because Elli was making so much racket, and now Luke is awake for his 3am feeding. He's a little early, but the girls probably woke him up.

Here's hoping that by the time I lay him back down, everyone else will be sleeping again and I will finally catch some shut-eye myself.

Attitude Check

It's been a rough several days. We started with a significant sleep deficit and kept adding to it all week. We've been wrestling with some confusing new physical issues with Elli, so I've been calling and emailing multiple specialists all week. We still don't have any clearcut answers.

Luke started sleeping a little more at night, but he's making up for the missed feeding by nursing more during the day.

And we started this crazy bathroom project. (That was poor timing on our part -- but in our defense, things looked good here when we started. 36 hours later life had made a 180, but there's no way to predict that, I guess.)

By Friday I was a mess. And then this little thing happened. I know it was little, in my head. But somehow, it seems like the little things bother me the most, especially when I'm tired.

My calendar said I had to take Elli down to the main Children's hospital for a 3:45pm appointment with her neurologist. This meant picking her up from school right in the middle of my prime nap time, driving 45 minutes down, and getting stuck in rush hour traffic on the way home. I don't normally see that doctor at the main hospital, but I'd rescheduled when we had a cardiology appointment made for us at the same time as Elli's original appointment. The first one I could get was down at the main hospital on Friday afternoon.

I had found a friend who was willing to come watch the kids for me so that at least they would get their naps. I knew it would be a grueling afternoon and I was dreading every second, but I knew I had to do it.

Then the phone rang. It was the doctor herself, calling to say they'd had a cancellation and would I like to come down earlier? I jumped at the chance. Then she suddenly said, "Don't I normally see you up north? Why are you coming down here, anyway? You don't exactly travel light!"

I was shocked. We've only seen her twice. (We must have made quite an impression.)

She then told me they could work me in Tuesday morning at the north office, just 10 minutes from my house. I hung up the phone and spent the rest of my morning thanking God over and over for the reprieve.

I got all three kids down for a nap at the same time at 2pm. I could tell that all three were going to sleep for awhile... like hours. I turned off the house phone, and made a beeline for my bed. I grabbed my cell phone though. I can't leave myself out of reach completely with a child like Elli in school. The one time I've done that recently, the school had to call Scott at work because they couldn't get ahold of me. He can't do much from his office downtown!

I was in bed and drifting off at 2:10pm.

My cell phone rang at 2:15pm.

It was a teacher from Elli's school and I could hear Elli screaming in the background. They didn't know what to do. They'd never seen her like that before.

I had. It was a bad sign. When she gets like that that, she's either really sick and in pain (she cried like that when she had pneumonia this spring) or she's beyond tired and inconsolable and won't stop crying for a few hours. Literally.

I dragged myself out of bed, called my neighbors (who fortunately could come over and stay with the kids so I didn't have to drag all the kids out of bed), and drove to school to bring Elli home. I was worried about her being sick, so I wasn't upset. Yet.

Once I got her home, I figured out pretty quickly that she was just tired. I layed her down in the living room, and tried to get her to sleep. I tried for about an hour, laying next to her, playing music, putting various children's programming on TV. But all she did was whine and wail, nodding off for the briefest of seconds only.

I finally moved into the living room and laid down on the couch, afraid to go too far away in case she had a real problem. But I was too close to her noise. I got little snippets of sleep, a minute here and a minute there, in between yells. I finally had to get up and start dinner, fighting back tears.

All three younger children slept from 2pm until 4:45pm. That doesn't happen every day. (For example, today Sam slept 3 hours, but Anna was up screaming after just 1 1/2, and Luke never did take an afternoon nap.) Friday I could have had 2 hours of sleep, just getting up in time to get Elli off the bus at 4pm.

Now I know that missing a nap is really a minor thing. But the whole chain of events seemed so cruel. It was like waving a beautiful, fragrant dessert under someone's nose and then throwing it into a compost bin.

So I've been wrestling with my response to this for a few days. I really do think a lot of my recent inability to handle life is a direct result of fatigue. Fortunately, I have a husband who doesn't avoid me when I'm having a bad day. He instead actually tries to help and usually succeeds rather well. (I usually give grumpy people a wide berth instead of sticking close and risking getting my head bitten off!) He did his best to get me some extra sleep, getting up with Luke both Friday and Saturday nights for me. So after an emotionally volatile weekend, today I'm doing a little better.

But I'm still confused. The whole thing seems so out of character to me. So I guess I have to go back to what I know to be true about God, not what seemed to be for a few hours on one day. He isn't whimsical or frivolous or a tease. And I don't have a right to be angry or bitter. As Job said, "The Lord gives and the Lord takes away. Blessed be the name of the Lord."

Isn't it amazing how we trip up over such little things?

Sleep and Sacrificial Love

No, this is not a blog about the challenges of getting adequate sleep with a newborn. I knew exactly what to expect when we brought Little Boy home, and I'm thrilled that we've got him home so soon and that I'm in the throes of every-2-to-3-hour feedings.

Instead, I am writing about the mysterious sleep patterns of children with cerebral palsy. This is an problem I never anticipated, but I'm discovering that sleep issues are more the rule than the exception with these children.

We've struggled off and on with Elli and her sleep routine since she first came home at 7 weeks old. As an infant, she never took the kind of hours-long naps that I had heard babies take. Her naps were 30 minutes to the second. If I didn't run to the shower as soon as she fell asleep in the morning, I'd miss my chance. I didn't have time to get a nap myself in that time -- even in my intensely sleep-deprived state, I still couldn't quite fall sleep in 30 minutes. Or maybe I did, but a 30 minute nap was but a flickering match compared to the massive glacier of sleep deficit I had going at the time.

Night-time sleep was also a challenge, mostly because until Elli's second heart surgery, we didn't think we could safely let her "cry it out" for long. She would get dusky -- her skin would get mottled and grayish, her mouth would get white, and she would soak herself with sweat whenever she got really worked up. When she was finally stable enough, at 7 months old, to cry as long as she wanted, she had developed some bad sleeping habits. It took weeks for her to stop crying for 30-45 minutes each night at bedtime, and she never quit crying altogether. (For some perspective, the next two siblings quit crying at bedtime or naptime after 2-3 days.)

If Elli wasn't ready to go to sleep when we were ready for her to, we'd just leave her in bed and ignore her protests. Sometimes it would be 2 hours, but she wasn't really bothering anyone.

Then siblings arrived. We put Big Boy in her room really early -- within the first 3 months -- so he's always been pretty good at sleeping through her scenes. Little Girl didn't start sharing a room with Elli until a year ago, when we moved into our new home. Elli's new room also shares a wall with ours, which is a double-whammy.

Little Girl isn't a great sleeper, though her problems seem to have started with the new sleeping arrangements. She wakes up with nightmares frequently, and almost invariably cries when she wakes up, whether from a nap or in the middle of the night. Elli can handle one outburst per night, if that. If Little Girl does this more than once (and this does happen), Elli is wide awake and it will be hours before she goes back to sleep, if at all. So them sharing a room isn't working out very well -- they each disturb the other frequently.

And all of this disturbs their mother. I have that mother's ability to hear the slightest noise from any child almost immediately. It's good when someone is sick or has a legitimate need. It's a pain because it keeps me awake when someone is wide awake and making noise for hours on end. I can't tune it out. And sharing a wall with the girls' room means I hear a lot more.

We've tried disciplining her for making noise at night. We've talked to her about considering others more important than herself, about how selfish it is to keep other people up just because she is awake, about obeying her parents, and more. After months and months, we've made zero progress with her. We've concluded that this is a level of cause and effect she is incapable of understanding. The other kids got it within days.

I feel very helpless these nights. The long hours drag by and I grow increasingly angry, frustrated, and desperate. I don't function well without sleep, especially when the lack of sleep persists for days. I know this, so I try to get the rest I need to help me be a good mom and wife. To have that need deliberately sabotaged is maddening. More so when I think of how the other kids are being affected -- their sleep is of poor quality those nights and it shows the next day.

During those late hours, I have concocted elaborate and desperate solutions to this problem: taking my pillow and a blanket out to the van to sleep (not an option in the current heat wave); putting Elli down in the basement on our spare toddler bed (too far away to hear if she has a real problem and too cold); buying and installing a sound-proof practice room for her to sleep in (too expensive and I have no idea how to provide adequate ventilation); finding a boarding house where she can sleep at night and still live with us during the day (don't think it exists and I really don't like her being out from under our roof); and using Benadryl or Sudafed to force her to sleep (fine when she's sick but unacceptable long-term).

We've tried moving her to the far end of the house, but my keen mother's ears can still hear her. It helps somewhat. I recently discovered that if I move out to that end of the house and turn on a fan, I can't hear her and can sleep. This still leaves the other kids in their bedrooms close to her, but Scott thinks they just need to learn to sleep through it.

In talking with doctors and other parents, I'm learning that this is all too common for kids with CP, and is likely to continue. One mom of a 17-year-old girl said that she hasn't slept through the night in years because her daughter always needs something in the night.

So we have to find a way to manage. We've started playing classical music for the girls all night, which at least seems to help Elli be quiet when she's awake. I'd like to find a white-noise machine, but so far haven't found something that runs all night (everything has an auto-shut-off after 10-60 minutes!). We're going to try earplugs too, (on the girls -- I can't wear them or I won't hear what I need to hear!).

But if it all fails, I think we'll need to move kids around. At that point, we'll be forced to conclude that Elli can't share a room. She'll have to move to the room across the hall from ours -- it's smaller and I'll hear her less. The other three could share the larger middle room, at least to sleep. It has plenty of room for a bunk bed and another twin bed. Little Girl's clothes and dresser could be in the smaller room. And we could try to soundproof the walls between the two kids' rooms.

I have to admit it can be depressing to think about dealing with this for the rest of Elli's life. I have a hard time seeing how this could possibly be good for me. My biggest struggles with her situation have come in the middle of the night when I'm exhausted and at the end of my rope. When she was a baby and I couldn't get her back to sleep, I even punched a door frame. Bad idea. Door frames don't give at all.

I've discovered I am very selfish about my sleep. I don't take kindly to someone messing with it, though I can rise above when they are really sick or in need. This is clearly an area God is working on with me. I guess sacrificial love means even giving up my sleep when someone is being selfish and just isn't tired, not just when they've got the flu or a had a nightmare and need a hug. And since I'm such an independent person, I'm guessing God is allowing me to get so exhausted to push me to rely on Him for strength for each day. Too bad I'm a stubborn and slow learner!

Good News, Bad News

I survived the sleep specialist yesterday.

It was the typical story when I try to get an early morning appointment so Elli doesn't miss an entire day of school. We were the 2nd appt of the day, and the first one started late. We started half an hour late, and then went over our 1-hour allottment because Elli's story isn't a quick one.

All in all, I walked away with mixed feelings.

The good news is that everything we are doing is good. We have a consistent, regular bedtime. We have a bedtime routine. We put each child to bed in their bed, and they have learned to fall asleep on their own in that bed. They don't fall asleep to the TV or to music or anything else that will eventually shut off (this can cause middle-of-the-night waking and inability to get back to sleep because the sleep environment changed and isn't the way it was when they normally fall asleep).

The bad news is that there really isn't much else we can try. He had only two suggestions, and they have no guarantee of making any difference in her ability to get back to sleep after waking.

He recommended, after looking at her sleep diary, that we push her bedtime back half an hour. He said she may not be physiologically ready for sleep at 8pm, so if we put her down at 8:30, that should, in theory, reduce the time she lays in bed awake. I like to spend some time with her at night anyway, so we'll do the normal bedtime routine, and then when the other two go to bed, I'll take her out to the family room with me and hang out for a half hour until 8:30.

Elli was all in favor of this development, of course. How many times does a doctor tell you that you are going to bed too early, after all!? She had a ball watching American Idol auditions last night, kicking and giggling at the awful singing and listening very carefully to the good stuff. We really enjoyed spending that time together, Elli and her dad and I, laughing and snuggling. I think this is going to be a great development for all of us. I've really missed her this year, now that she's at school all day. So this evening time is reallly special for all three of us.

The other suggestion is to wait a good hour when she wakes at night. He really wanted us to give her a long chance to go back to sleep herself before we go in to her room. He suspects that those nights she wakes early she just got enough sleep and is ready to go for the day. If she is sitll awake after an hour, then go in and tell her she needs to be quiet when she's the first one up and move her somewhere else if necessary. He said at that point, she isn't likely to return to sleep, so moving her wouldn't be counterproductive, though he said not to turn on lights and music and all that either. This would just reinforce to her body that 4am is a fine time to get up!

So my worst fears were not realized -- he said we're doing a great job with her. He also said that on the whole, if the 3 weeks we tracked are a good snapshot of reality, she is really only waking up in the night once a week. That isn't bad enough to indicate a medical problem (which is good!). I also suspect that two of the 3 wakings she had were because she was coming down with a cold. I think she had a sore throat that woke her. So I think I'm going to try giving her Tylenol when I move her out of her bedroom in the future -- if her throat hurts, maybe getting some relief would help her get some sleep after all. And if not, Tylenol once a week for no reason isn't going to hurt her.

But we didn't get any magic bullets either. We're basically stuck with the situation as it is. I guess God really wants me to get better at handling stress in the middle of the night when I'm tired and groggy and extra-specially impatient!